On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Monday, February 23, 2015

A fever a day ...

We are still here - in patient at St.Jude. When we arrived on Friday, blood cultures were taken that have since grown bacteria and Phoebe's antibiotics have been adjusted to properly treat this. Her PICC line will be replaced on Wednesday, bringing the total number of lines to thirteen, or twelve - I have lost count. While all of this has been going on, Phoebe's entire body decided to break out in a bright red rash. The rash seems to come and go in terms of severity but when it flares, so do the fevers, so we are still here. Phoebe needs to be 48 hours without a fever before she is discharged.

The doctors suspect that Phoebe may have a virus in addition to the infection and that is what is causing the rash, although she has no other symptoms. They are testing for viruses and we hope to have results soon. We have had visits from the infectious disease doctors and been asked many questions, including whether or not we have recently been to Disney Land.

It is hard not to feel scared and overwhelmed. Phoebe still has no immune system - her white blood cell count was just 0.1 today. All of this is a lot to ask of that fraction of a cell.  When last checked, her bone marrow was making more leukemia cells than healthy cells. We need healthy cells to fight viruses and bacterial infections. We need healthy cells to heal Phoebe's tired body, so that we can continue to take steps forward. 

This morning, Phoebe woke up and asked for breakfast and a movie. She played while she watched and she cheerfully greeted her many visitors with a smile and a giggle before she eagerly showed them her latest, most prized possession, her bright pink tooth brush. Many people who visit comment on how far she has come and how much has changed since we were in patient last. Although she is not nearly as sick as she was then, she is not herself and we are constantly worried about what will happen next. We are choosing to focus on what the next good thing will be rather than waiting for more to fall apart. 

For the past three nights, Mae has slept in the parent room at the hospital. The parent room is connected to Phoebe's room and has a couch and a bathroom, so each night, Mae has tucked Phoebe in and happily cuddled in on the pull out with either Jon or I. We are thankful to be able to do this, as Mae refuses to leave her sister. We hope to be home soon, because we all miss our beds. 

A special thank-you to Sarah Lystiuk, an Arbonne Independent Consultant and old friend, for dedicating the proceeds of the sale of Arbonne products sold before February 28th, to our family. For more information, please visit her Facebook page at https://m.facebook.com/profile.php?id=215521985286701

1 comment:

  1. Oh, sweet Phoebe, hope that fever is gone by now and you are home resting with your Mommy, Daddy and Big Sister all in one place. Praying, as always, for all of you.